At-risk marriages after compulsory premarital testing and counseling for β-thalassemia and sickle cell disease in Saudi Arabia, 2005-2006

Abstract

Results from a screening program for sickle cell disease and β-thalassemia suggest about 90% of couples in Saudi Arabia at risk of having affected children still decide to marry. This study determined the rate of at-risk marriages and identified several factors that may prevent at risk couples from marrying. The marriage status of 934 at-risk couples was determined from original screening program records in the Ministry of Health. Of 934 couples, 824 married (88.2%) and 110 (11.8%) did not. A case-controlled study was conducted on 104 couples who did not marry (cases) and 478 couples who did marry (controls) in order to assess relationships between various cultural and social factors and marriage decisions. In the case-controled study, 28.8% of couples (30/104) who did not marry (cases) knew their disease or carrier status before screening compared to 18% (86/478) of those who married (controls). Reasons couples gave for proceeding with marriage included: wedding plans could not be canceled, and fear of social stigma. Couples who did not marry reported being influenced by prior knowledge of their disease or carrier status and whether they or family members were affected. Approximately half of the cases and controls (n=270, 46.4%) thought it best to undergo screening before proceeding with the engagement and wedding plans. Most couples received no advice to participate in genetic counseling services. Marriage decisions for the small number who received genetic counseling (n=168, 27.6%) did not differ significantly from those that received no counseling. Recommendations are made for improving the effectiveness of this screening program. © National Society of Genetic Counselors, Inc. 2011.